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Report on the 2006 Annual Meeting

- By Valerie Slee, Co-Chair, Board of Directors

October 25, 2006

The TMS Annual Conference 2006
Portland, Maine
October 20-21, 2006

Greetings members everywhere!

The Board of Directors are all home aching, sneezing, gargling, blowing noses, and otherwise trying to recuperate from a fresh upper respiratory infection that we all contracted during the annual meeting. However, the consensus is—it was more than worth it! What an amazing experience this year’s conference was. I will attempt to do it justice in this report.

Most of the board members and their families arrived on Thursday during the afternoon, and we immediately met with the hotel conference coordinator, Jennifer Farmer, and the banquet captain, Christian, and reviewed last minute details. Then, the board all proceeded to unload crates, boxes, and bins full of stuff that we had prepared for weeks, but that really limited our view en route to Maine in the car! We were met by many of the amazing members of the Northeast Support Group, who all checked into the hotel, and then got right down to work helping us to unpack and set up. What a team! We worked from 6 pm until well past 11 pm, but many hands made the experience enjoyable and a bit raucous at times! Beth and Erika Clerc and her brother did errands for us as well as helping us set up. In five hours, we had the entire conference room set up and ready to go. We also set up a children’s room, which was supervised by Italia Giacco, with help from teenagers Erika, Brooke, and Ashley. A local merchant, Debbie McDonald, donated pumpkins for the kids to decorate, and Gigi Park delivered them to the hotel. Wanda and her helpers set up the TMS store, with the new featured items being a navy blue sweatshirt with a white logo and lighthouse, and a navy baseball cap with TMS embroidered on it. Dr. Cem Akin, Dr. Joseph Butterfield, and Dr. Srdan Verstovsek were all seen arriving at the hotel throughout the preparations. This year’s conference attendees received a TMS tote bag to hold all of their materials, which included their folders with the conference schedule, a report from every board and committee chair, a copy of the TMS bylaws with any new amendments added in 2006, a CD of the latest research articles ( collected by Ann, Nancy, and Louis of the Research Advisory committee, chaired by Candace Van Auken, and transferred onto CD by Len Levenda), a TMS travel mug, and an Epi-pen carry kit from Dey Pharmaceuticals (which contained a carry case, DVD on how to use the Epi-pen, and a booklet on anaphylaxis). We stuffed all the bags on Thursday night to expedite registration for Friday morning. We set up articles from past years, and a display thanking our sponsors: Dey Pharmaceuticals (Epi-pen), Azur Pharma (Gastrocrom), Critical Therapeutics (Zyflo) and Genentech (Xolair). We also set up displays with information provided to us by Dr. Peter Valent on the European Competency Network on Mastocytosis, and on the new mast cell research and treatment unit opening in Toledo, Spain under Dr. Luis Escribano. The Maine Chamber of Commerce worked with our PR Chair, Jody Bachiman, and provided maps of the Portland area and a guide book, as well as a display of all the tourist attractions nearby. In addition, Beth Clerc and Gigi Park each gave us all a list of favorite eateries and attractions in the area. We also had a display of the UK support group materials from Irene Wilson, and they were very impressive indeed! We had a great poster to display of the Arizona Support group, too. We also had a wonderful table showcasing several state baskets, and a silent auction table with beautiful framed artwork, a quilt made by Rita, and an afghan made by Rita too, as well as a great book on baseball and other prizes. There were many tables of raffle prizes donated by so many people, and a huge shipment came from Time-Warner as a result of Jody Bachiman’s hard work as PR Chair.

We had anticipated 75-80 attendees, so we were delighted when the final count was 110 attendees! Registration began at 8 am, and a continental breakfast was served during the first hour. Wanda and Regina registered everyone, and Wanda had wonderful name tags for all to wear. Rita welcomed everyone to the conference, and we had the pleasure of meeting Dr. Melody Carter for the first time—she was really lovely. Attendees were busy reading all the information in their packets in this first hour.

The first speaker was Dr. Cem Akin of the University of Michigan at Ann Arbor, and he spoke on “Idiopathic Anaphylaxis or Mastocytosis”. As one of the Co-chairs on the AAAAI Task Force on Mast cell disorders, Dr. Akin reviewed and clarified the different presentation and diagnostic markers for mastocytosis versus idiopathic anaphylaxis/MCAS/MCAS. He was followed by Dr. Melody Carter, from NIH/NIAID, who spoke on “Pediatric Mastocytosis”. Many parents requested Dr. Carter as a speaker. Dr. Carter gave us a great overview on the managing a child with UP and/or systemic disease. She minimizes lifestyle restrictions for such patients, encouraging the children under her care to be as active as possible. Dr. Carter had some very graphic slides of children with severe UP. Even though faces and other identifying features were blocked out, as per NIH/NIAID guidelines, these photos will not be visible on the conference DVD to protect the privacy of the children involved. The third talk (with breaks in-between) was Dr. Srdan Verstovsek from M.D. Anderson Cancer Center. He spoke on “Recent and Ongoing Studies for Systemic Mastocytosis.” Dr. Verstovsek reviewed the diagnostic markers expressed by mast cells, and appropriate treatment for all types of mastocytosis. Of interest, Dr. Verstovsek stated that chemotherapy is not to be used for indolent mastocytosis, but rather, should be saved for mast cell leukemia and some cases of aggressive mastocytosis, with and without other hematological disorders. All three talks were excellent, and so full of information that I will need to buy a set of the DVDs ($50.00, and available in 3 weeks) to listen to them again and absorb it all.

From 12:00 to 2:00, the attendees ate lunch at a site of their choice, and the board met with the Medical Advisory Board for a Round Table Discussion in a conference room. This discussion was a working meeting with an agenda that included formulating plans to host a mini-symposium or consensus meeting to define the disorders of mast cell activation, and to define the diagnostic criteria for these disorders. We also discussed the Task Force on Mast cell Disorders. There seems to be some confusion about task force versus a round table discussion, understandably, since many of the same people are involved in both.

The Task Force on Mast Cell Disorders is under an interest group of the American Academy of Allergy, Asthma and Immunology. It is co-chaired by Dr. Mariana Castells and Dr. Cem Akin. TMS encouraged the formation of the task force, however, it is neither part of TMS, nor were we allowed or invited to attend the first meeting which took place during the AAAAI meeting in Miami. However, at the first meeting, Dr. Castells and Dr. Akin brought the issue of TMS being allowed to send a delegate to the task force meeting, and that was approved by all the task force members. TMS has asked Candace Van Auken, Chair of our Research Advisory Committee, or one of her committee members, to attend the 2007 Task Force Meeting as the TMS representative. While Dr. Castells and Dr. Akin were both speakers and participants at the TMS meeting in Maine, as well as members of the TMS advisory board, our TMS meeting had no formal connection with the Task Force, which will reconvene at the AAAAI in February 2007. TMS is very committed to encouraging both definition of, and diagnostic criteria for, the disorders of mast cell activation, in addition to encouraging the revision of the diagnostic criteria for systemic mastocytosis. To that end, we asked the members of our Medical Advisory Board and speakers at the TMS conference in Maine to join in this Round Table Discussion with the intent of beginning to plan how to prepare for both the AAAAI Task Force on Mast cell Disorders, as well as a possible independent symposium on Mast Cell Disorders. Board members were present, and we presented to them the concerns of members brought to us regarding this issue, particularly that we do not want to see diagnostic criteria for MCAD result in excluding patients that currently have no diagnosis, have no documented mediator release via lab tests, but who suffer from mediator release symptoms, and who respond to standard mast cell stabilization treatment. WE STRESSED THAT MANY OF US ON THE BOARD AND IN THE GENERAL MEMBERSHIP ARE FRUSTRATED, DISHEARTENED, AND SIMPLY AFRAID THAT WE WILL END UP EVEN DEEPER IN MAST CELL LIMBO IF THESE DIAGNOSTIC CRITERIA FOR MAST CELL ACTIVATION DO NOT INCLUDE THE OPTION OF HAVING A CLINICAL DIAGNOSIS OF MCAD IN THE ABSENCE OF ANY CONFIRMATORY LAB TESTS. These very kind doctors both listened to us and heard us, and said that in order for the medical community to accept any standardization of practice on diagnosing mast cell disorders, there have to be members present in the discussion who hold opposing views, to articulate both sides of the issue. They will be making a strong case for the definition of MCAD, but it may take several revisions of diagnostic criteria before standards of practice are accepted and put into use by doctors in major medical centers. Therefore, some patience is required. Just because the AAAAI has a Task Force that is looking at this issue does not mean that we at TMS are guaranteed the results that we are hoping for, which is very inclusive diagnostic parameters for MCAD, including the option of a clinical diagnosis, based on presentation and response to treatment even in the absence of documented mediator release.

However, regardless of what this first step from the independent AAAAI Task Force results in, TMS will continue to take a formal stand, with the support of our MAB, that:

1. MCAD/MCAS/MCBAS exists, and many of the patients are challenged daily by severe symptoms caused by mediator release.
2. Since there is still much that is NOT known about all of the mast cell mediators and their effects, we encourage the Task Force to make the diagnostic criteria for MCAD/MCAS/MCBAS as broad as possible, and to include the option of a clinical diagnosis based on history of symptoms, presentation and response to treatment with H1 and H2 blockers, mast cell stabilizers, prostaglandin inhibitors and leukotriene inhibitors.
3. TMS urges that this mast cell activation disease be given a name and diagnostic criteria as soon as possible, so that medical codes can be assigned to it, which will help us all obtain continuity of care and disability, via social security or otherwise.
4. TMS would like to be able to offer written guidelines as standards of practice for diagnosing both MCAD/MCAS/MCBAS, as well as revised guidelines for systemic mastocytosis (due to be revised in a symposium led by Dr. Peter Valent in 2007) to members, physicians, and other medical personnel as soon as possible.

Another thing discussed at the Round table Discussion was TMS plans to look into attending a meeting of the American Academy of Pediatrics, to spread awareness about mast cell disorders to pediatric practitioners. The Round Table Discussion was a step in the right direction for TMS, and we appreciate the doctors giving up their lunch break for this issue.

Immediately after the Round Table Discussion, we had the first Panel discussion. Participating doctors were Dr. Cem Akin, Dr. Joseph Butterfield, Dr. Melody Carter, Dr. Mariana Castells, Dr. Luis Escribano, and Dr. Srdan Verstovsek. Unfortunately, Dr. Theoharis Theoharides was unable to attend the conference due to last minute schedule demands on his time. He was missed! The panel discussion lasted two hours, and I moderated it, with help from all of these wonderful doctors. There were over 120 questions presubmitted to me, and I combined and organized them by subject. I submitted them to the doctors 3-4 weeks before the conference, so that the doctors could review them and prepare as necessary. Although we did not finish them all, we did complete 90% of them. The entire panel discussion is included along with all of the individual speakers on the conference DVD. One last thing about the panel discussions: these doctors are human beings, not gods. They got tired from the demands of an exhausting conference, as we all did. They answered questions to the best of their ability, very eloquently, often in English as a second language, and sometimes they simply did not know the answer, or have access to any data that would allow them to compose a thoughtful response to a question. However, at all times, they were respectful, caring, thoughtful, and concerned. If some of you did not get the answer you were hoping for, please understand that much more is NOT known about mast cell disorders than is known, and we all have much to learn, the doctors and researchers included.

At 4:00 pm, we concluded for the afternoon. The Board of Directors took the speakers and members of our Medical Advisory Board out for a seafood dinner at Dimillos, a floating restaurant in Portland Harbor, and the food was delicious. We applied for, and received, grant money to take the doctors out as guests of TMS. The doctors continued much of the discussion that started at the lunchtime round table as they ate. Our original plan, to take the doctors to Two Light State Park, eat lobster and seafood on the cliffs, and get a group lighthouse photo, was thwarted by gale force winds, heavy rain, and a violent cold front. But, we were prepared with back-up reservations, so a good time was had by all anyway! Some of us returned to flooded rooms as the gale force winds blew water in between the window seals. We apologize for anyone that was inconvenienced by this unfortunate situation.

We returned to the hotel, and had a delicious ice cream social, and a book signing. Lovely flute music was played by my father, Sebastian Giacco, and I thank him for setting such a nice atmosphere. The book, Immunology and Allergy Clinics of North America: Mast cells and Mastocytosis. August 2006, Volume 26, Number 3, with the Guest Editor being Dr. Cem Akin. Dr. Castells, Dr. Butterfield, and Dr. Escribano also contributed chapters, and signed books with Dr. Akin. The publisher, Elsevier Saunders, allowed us to sell the books for $75.00, which is $10.00 less than the retail price, and all twenty books we ordered sold! We will be able to get more books to sell at this price, so if you are interested, please contact me at vmslee@aol.com.

At 7:45pm we broke into three support group meetings: patients, caregivers, and parents of children. The patient support group was moderated by Cindra Carey, the caregiver support group was moderated by Karen Curtiss, and the parents of children support group was moderated by Dr. Melody Carter. We met until well after 10:00 pm, and we learned from each other, laughed together, and commiserated about the challenges presented to us by mast cell disorders.

We dropped into bed at 11:00 pm! And on to Day 2!

On Saturday, the 21, we again met for breakfast at 8 am, only today, people were tired and arrived a bit later! Awards were presented throughout the day to support group leaders who were present, to volunteer fundraiser Jim Boyle, and to each of the doctors before they spoke. At 9:30. Dr. Mariana Castells spoke on Mast Cell Mediator Related Symptoms and Their Control. Dr.Castells made many important points, but one thing she stressed really stuck in my mind: the only position to be in when using an Epi-pen is lying down with your feet and legs at or above the level of your heart. Dr. Castells also clarified which mediators were responsible for each of the symptoms we experience, and which medications are effective for those symptoms. She was followed by Dr. Luis Escribano, who spoke on the “Patient Protocols for the Mast Cell Unit in Spain. Dr. Escribano does a complete work-up including bone marrow biopsy on every patient that comes to his unit. Any time a new medication is tried on a patient with a mast cell disorder under his care, they are admitted to ICU to make sure that emergency medications and equipment is available to treat anaphylaxis. This was followed by an excellent presentation by a gastroenterologist from Brigham and Women’s Hospital in Boston, Dr. Norton Greenberger. Dr. Greenberger gave us many insights on keeping a careful food diary to help us control our symptoms, and really explained clearly how the whole GI tract functions. He also discussed which medications might best help for pain, nausea, GERD, diarrhea, and vomiting.

We had hot buffet lunch at 12:00 noon. For those of you who have not attended a conference, we offered the following foods, in hopes of having something that everyone could eat: grilled chicken breast, with gravy/sauce on the side, roast pork with hot apples on the side, plain white rice, red bliss potatoes roasted with rosemary, mixed fresh vegetables—green beans, carrots, squash, rolls and butter, a garden salad with dressings and oil and vinegar on the side, fresh fruit, and an assortment of cakes. The food was very good, especially considering how plain it had to be, and there was always water, coffee, tea, juice, and sodas for beverages. Some of the doctors met to continue the Round Table discussion over lunch, but two doctors escaped to LLBean, and they still think that I don’t know that!

At ???? Rita Barlow called the annual business meeting to order, and Len Levenda, interim secretary, read minutes from last years meeting, which were approved, and reports from every board chair and committee chair. An announcement was made that bylaw revisions have been postponed until after the election, to allow any new board members to have a part in the decision making. I gave a brief report on the minutes from the AAAAI Task Force on Mast cell Disorders. Many recognition awards were given to board and committee chairs in between reports. We heard about the wonderful Mastocytosis Chronicles, and a member stood to compliment Wanda Hermann, editor, on the great job she has done with this quarterly newsletter, which is now published four times yearly, and is four times longer than it used to be. We discussed how fundraising under Emily Menard has increased our bank accounts significantly. We heard about all the new support groups under Cindra Carey, here and abroad. We listened to a report from Regina Rentz about the bank accounts, which are both healthy, and as the research account nears the $40,000 mark, we will plan to invite research proposals in 2007. We announced that a member, Sally Papi, and her sister had come up with a slogan for TMS: Mast cell disorders—too much of a good thing! We will be incorporating that slogan into future products for sale in our TMS store. Candace Van Auken spoke about her goals as Research Advisory Chair, and she made us all practice saying carboxypeptidase! Jody Bachiman talked about her goals as a new Public Relations Chair, including getting more corporate support, and finding a celebrity to take on our cause. Emily and I reported on the Drug Shortage Committee, and our liaison with the FDA’s drug shortage committee. I announced two new members of the Medical Advisory Board, Dr. Larry Schwartz and Dr. Leonard Bernstein, Ashley Greenwald made a presentation as an ambassador about Make a Wish Foundation, and the opportunity it afforded her to swim with dolphins. Her presentation was poised and impressive! A final opportunity to vote for the candidates standing for election was offered, and Wanda had ballot materials available for anyone that either wanted to vote or to submit a second vote, which would supersede the first. Voting was concluded, and the ballots were all prepared to be shipped to Peter Berns of the Maryland Association of Non-profit Organizations for verification of membership and counting, and the election results will be announced on November 6, 2006 via teleconference with Peter Berns. All members may join in by contacting Peter Berns at the email address provided in the meeting announcement. The business portion of the meeting was adjourned until the election results are announced on November 6, 2006. Candidates standing for election who had not already been up to the podium were asked to stand, so that members could see whom they might have voted for.

The second Panel discussion started at 2:00 pm. This panel consisted of Dr. Norton Greenberger, Dr. Richard Horan, Dr. Mariana Castells, Dr. Luis Escribano, Dr, Cem Akin, and Dr. Joseph Butterfield. Dr. Verstovsek had to leave to catch an early plane.

Ashley and Brooke, two of the teenagers that helped in the children’s room, made a terrific poster to present to the doctors, thanking them for their dedication to those of us with mast cell disorders. We picked up where we had left off the day before, beginning with the gastroenterology questions. We took questions until 4:10 pm, and then we finished the auction and raffle drawings before concluding the conference. It was so hard saying good-bye to new friends and new faces! We all learned so much from each other during these two days!

Now comes the comic relief. We were still determined to get out to the lighthouses, and the weather was beautiful. We invited anyone that was still around to join us, advised them to dress warm (it was cold and blustery, but sunny and the foliage was spectacular!), and met in the lobby. Unfortunately, it took a long time to round everyone up, and we left later than we had hoped. By then, we missed out on having Dr. Horan join us. By the time we caravanned out to Two Light State Park and the Lobster Shack, the sun was setting, the wind was blowing—and they had no tables for us, because we were so late. We gathered for some quick photos, and decided that it was too cold to wait outside until tables opened up, so we decided to head back to downtown Portland. Now, keep in mind that we are dressed for the outdoors—sneakers, sweaters, jackets, like a whole tribe of nanooks of the north! Because it was Saturday night, no restaurant that we could enter dressed like this could accommodate us for at least two hours, so instead of a Portland seafood dinner, we ate at the Macaroni Grille. Not exactly what we had planned, but everyone was good natured and friendly, and judging from the laughter, we all had a great finale to the conference!

Anything of this magnitude involves the work and volunteer spirit of many individuals. No one could imagine how many hours go into preparing for a conference like this—I sure didn’t, until I was the one doing the work. Special thanks to the board and committee members and chairs, the doctors, the northeast support group members who showed up to help set up, and the people that helped with a lot of the “behind the scenes” work” Beth Clerc and children, Davita Greenwald, her mom, and Ashley, Elaine and Janet Mezzanotte, Gigi Park, Cindy Conroy and husband, Kitty Anderson and Karen Curtiss, Ricki Carroll and Jamie, Jim and Pat Boyle, our patient husbands Andy, Jim, and David, and my parents, Sebastian and Italia Giacco. We have a list of suggestions circulating for next year, and we look forward to more input from members. Thank you all for an amazing TMS Conference 2006. We are honored to have been able to work on your behalf, and we will see you October 12-14 in Houston, Texas!

Valerie M. Slee, Vice-Chair
Board of Directors
Liaison, Medical Advisory Board
The Mastocytosis Society
23 Camelot Drive
Shrewsbury, MA 01545
Phone: 508-842-3080
Fax: 508-842-2051 email: vmslee@aol.com
www.tmsforacure.org

Report on the Round Table on Mast Cell Disorders

- By Valerie Slee, Co-Chair, Board of Directors

During lunch on Friday, October 19th, at the Annual Conference the TMS Board met with the Medical Advisory Board for a Round Table Discussion. This discussion was a working meeting with an agenda that included formulating plans to host a mini-symposium or consensus meeting to define the disorders of mast cell activation and to define the diagnostic criteria for these disorders. We also discussed the Task Force on Mast Cell Disorders. There seems to be some confusion about the task force versus a round table discussion, understandably, since many of the same people are involved in both.

The Task Force on Mast Cell Disorders is under an interest group of the American Academy of Allergy, Asthma and Immunology (AAAAI). It is co-chaired by Dr. Mariana Castells and Dr. Cem Akin. TMS encouraged the formation of the task force. However, it is neither part of TMS nor were we allowed or invited to attend the first meeting, which took place during the AAAAI meeting in Miami. But at that first meeting, Dr. Castells and Dr. Akin brought the issue of TMS being allowed to send a delegate to the task force meeting, and that was approved by all the task force members. TMS has asked Candace Van Auken, Chair of our Research Advisory Committee, or one of her committee members, to attend the 2007 Task Force Meeting as the TMS representative.

TMS is very committed to developing the definition of, and diagnostic criteria for, the disorders of mast cell activation, in addition to encouraging the revision of the diagnostic criteria for systemic mastocytosis. To that end, we asked the members of our Medical Advisory Board and speakers at the TMS conference in Maine to join in this Round Table Discussion with the intent of beginning to plan how to prepare for both the AAAAI Task Force on Mast Cell Disorders, as well as a possible independent symposium on Mast Cell Disorders. Board members were present, and we presented to them the concerns of members brought to us regarding this issue, particularly that we do not want to see diagnostic criteria for MCAD result in excluding patients that currently have no diagnosis, have no documented mediator release via lab tests, but who suffer from mediator release symptoms, and who respond to standard mast cell stabilization treatment. We stressed that many of us on the Board and in the general membership are frustrated, disheartened, and simply afraid that we will end up even deeper in mast cell limbo if the diagnostic criteria for mast cell activation do not include the option of having a clinical diagnosis of MCAD in the absence of any confirmatory lab tests.

These very kind doctors listened to us and said that in order for the medical community to accept any standardization of practice on diagnosing mast cell disorders, there have to be members present in the discussion who hold opposing views, to articulate both sides of the issue. They will be making a strong case for the definition of MCAD, but it may take several revisions of diagnostic criteria before standards of practice are accepted and put into use by doctors in major medical centers. Therefore, some patience is required. Just because the AAAAI has a Task Force that is looking at this issue does not mean that we at TMS are guaranteed the results for which we hope.

However, regardless of what this first step from the independent AAAAI Task Force results in, TMS will continue to take a formal stand, with the support of our MAB, that:

1. MCAD/MCAS/MCBAS exists, and many of the patients are challenged daily by severe symptoms caused by mediator release.
2. Since there is still much that is NOT known about all of the mast cell mediators and their effects, we encourage the Task Force to make the diagnostic criteria for MCAD/MCAS/MCBAS as broad as possible, and to include the option of a clinical diagnosis based on history of symptoms, presentation and response to treatment with H1 and H2 blockers, mast cell stabilizers, prostaglandin inhibitors and leukotriene inhibitors.
3. TMS urges that this mast cell activation disease be given a name and diagnostic criteria as soon as possible, so that medical codes can be assigned to it, which will help us all obtain continuity of care and disability, via social security or otherwise.
4. TMS would like to be able to offer written guidelines as standards of practice for diagnosing MCAD/MCAS/MCBAS, as well as revised guidelines for systemic mastocytosis (due to be revised in a symposium led by Dr. Peter Valent in 2007) to members, physicians, and other medical personnel as soon as possible.

Another thing discussed at the Round table Discussion was TMS plans to look into attending a meeting of the American Academy of Pediatrics, to spread awareness about mast cell disorders to pediatric practitioners. The Round Table Discussion was a step in the right direction for TMS, and we appreciate the doctors giving up their lunch break for this issue.